Nora Šitum: Coming to America

A five year-old Croatian girl, Nora Šitum, is suffering from acute lymphoblastic leukemia and needs immediate treatment. Although the economic situation in Croatia is in crisis – the country’s debt was just lowered to junk status last week – within just a few days, the family had raised the $590,000 for Nora’s treatment at the Children’s Hospital of Philadelphia. She is front-page news in Croatia, and the story is proving to be something of a PR headache for a Philadelphia hospital and the American Embassy in Zagreb. Her story made the front page of social media site Reddit Wednesday morning (but was later removed due to an editorialized title).

After all that money had been raised so quickly, Croatian media reported yesterday that the Hospital had informed Nora’s family that the charge would actually be just over $834,000. That’s aside from the fact that her family and caregivers have been working feverishly to work through the complicated Croatian and American bureaucracies involved with transporting a little girl from a non-visa-waiver country to the US for medical treatment. The process to obtain such a visa is more difficult than just getting a tourist visa – you also need to establish that travel to the US is necessary because the proposed treatment is unavailable in Croatia, and the applicant must be seen by an Embassy physician. You also need to prove that you have an appointment and the financial means to pay the bill.

Obviously, the United States Embassy in Croatia and the Children’s Hospital of Philadelphia are unable to comment about specific ongoing cases, but I did manage to speak with people close to the situation who agreed to discuss the case on condition of anonymity.

Under the Croatian national health care scheme, people are able to apply for payment of medical treatment undertaken abroad, and 75% of such requests are approved on an average year. However, the stem cell treatment that Nora is scheduled to undergo in Philadelphia is classified as “experimental”, and as such, the government health care plan will not cover any of it – the family has to come up with cash.

The Šitum family has been in close touch with the US Embassy’s consular staff, and visas for Nora and her family were expected to be issued Wednesday afternoon. The Embassy has been in close touch with both the hospital and the Croatian Ministry of Health to coordinate the issuance of visas and doing “whatever it takes” to ensure that Nora and her family can travel to the US for these treatments.

To perform the treatment, doctors remove millions of the patient’s T-cells — a type of white blood cell — and insert new genes that enable the T-cells to kill cancer cells. The technique employs a disabled form of H.I.V. because it is very good at carrying genetic material into T-cells. The new genes program the T-cells to attack B-cells, a normal part of the immune system that turn malignant in leukemia.

The altered T-cells — called chimeric antigen receptor cells — are then dripped back into the patient’s veins, and if all goes well they multiply and start destroying the cancer.

The T-cells home in on a protein called CD-19 that is found on the surface of most B-cells, whether they are healthy or malignant.

Nora’s father wrote a message thanking supporters and people who had so quickly donated money for Nora’s treatment, adding,

Thank God we live in Croatia – a country with a “junk” credit rating – and sent a message around the world.Maybe we are small and poor, and perhaps we don’t have the same living standards as the West, but for our children, we will empty our pockets of every last penny, because we have a heart and soul bigger than Switzerland’s credit rating.

UPDATE: The Children’s Hospital of Philadelphia issued the following statement:

CHOP treats thousands of children each year, from throughout the region, the country and the world and cares about the health of all children. We know how invested the family, friends, and the community at large is in ensuring CHOP provides the best possible care for all of its patients.

While patient privacy prohibits us from commenting specifically on any individual’s medical condition without consent, we want the public to understand the pricing protocols we follow for all international families.

How the International Medicine Process Works:

· CHOP’s process estimates the costs of treatment in advance and seeks payment at the time treatment begins. Additional follow-up clinical treatments are sometimes necessary and can be administered over several years, either at CHOP or back in the patient’s home country. CHOP does not charge for this follow-up clinical treatment at the time of initial treatment. If the child is not further treated at CHOP, CHOP will never charge for the follow-up treatment. However, CHOP does explain those potential costs to patient families at the outset so they understand the financial issues they may be facing.

· We try to ensure that all international families understand the difference between the initial costs of treatment charged by CHOP, which does not change, and the potential future costs which will depend on future clinical treatments.